CREA (Centro Ricerca E Ambulatori), Fondazione San Sebastiano, Misericordia di Firenze, Florence, Italy - SIDiN (Società Italiana per i Disturbi del Neurosviluppo), Genova, Italy.
Servizio di Integrazione Lavorativa, Azienda Sanitaria Friuli Occidentale, Pordenone, Italy.
Ann Ist Super Sanita. 2020 Apr-Jun;56(2):180-192. doi: 10.4415/ANN_20_02_08.
The paper reviews the international literature on quality of life (QoL) for persons with neurodevelopmental disorders (NDD) in order to define the theoretical frame for optimal assessment. The application of the QoL approach to assessment procedures should be based on three main aspects: shared QoL, personal QoL and family QoL. The first aspect refers to characteristics of individual life that are shared with other people. The second aspect proceeds from the fact that each individual has a changing set of personal attributes that determine the subjective experience of life. In the third aspect the previous two are applied to the family that includes a person with NDD. Disability impacts the whole family and the determination of appropriate conceptualization of family outcomes requires an understanding of the impact of members with a disability on family QoL. At any level, it seems best to take a comprehensive approach to assessing QoL, integrating subjective and objective aspects, self-reports and hetero-evaluations. The QoL approach is above all a way to explore the rich intricacies of personal quality of life. Such assessment may be used effectively with people with NDD, independently from the severity of their functioning impairment. Individuals with profound ID may express their inner states through consistent behavioural repertoires, which can be discerned by persons closest to them and validated by more independent others. Attention must be paid in using non-generic instruments, such as those that measure health-related QoL. Although they do focus on the individual person, they still support a theoretical perspective of QoL that has not departed significantly from the traditional medical approach. Currently available generic tools, although they have some common conceptual and evaluation characteristics, still show considerable differences in the areas to be included in "shared QoL", the dimensions used to evaluate "Individual QoL", and the role attributed to indicators of QoL. QoL assessment should not represent a classification of individuals, services or systems, but it should help provide, within service systems and organizations, a value system that is consistent with those values held by people with NDD.
本文综述了神经发育障碍（NDD）患者生活质量（QoL）的国际文献，以确定最佳评估的理论框架。将 QoL 方法应用于评估程序应基于三个主要方面：共同 QoL、个人 QoL 和家庭 QoL。第一个方面是指与他人共同拥有的个人生活特征。第二个方面是基于这样一个事实，即每个人都有一组不断变化的个人属性，这些属性决定了生活的主观体验。第三个方面是将前两个方面应用于包括 NDD 患者在内的家庭。残疾会影响整个家庭，要确定家庭结果的适当概念化，需要了解残疾成员对家庭 QoL 的影响。在任何层面上，似乎最好采取综合方法来评估 QoL，综合主观和客观方面、自我报告和他评。QoL 方法首先是一种探索个人生活质量丰富复杂性的方法。这种评估可以有效地用于 NDD 患者，而与他们的功能障碍严重程度无关。有严重 ID 的个体可以通过一致的行为反应来表达他们的内在状态，最亲近他们的人可以察觉到这些反应，并得到更独立的其他人的验证。在使用非通用工具（如测量健康相关 QoL 的工具）时，必须注意这一点。尽管这些工具确实关注个人，但它们仍然支持 QoL 的理论观点，这些观点并没有从传统的医学方法中显著偏离。目前可用的通用工具虽然具有一些共同的概念和评估特征，但在“共同 QoL”应包含的领域、用于评估“个体 QoL”的维度以及 QoL 指标所赋予的作用方面仍存在很大差异。QoL 评估不应代表对个人、服务或系统的分类，而应有助于在服务系统和组织内提供一种与 NDD 患者所持有价值观一致的价值体系。
